Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Patients and family members (N = 671) were surveyed in five Mid-Atlantic U.S. hospitals to ascertain the number and kinds of ethical concerns they are presently experiencing or have previously experienced while being sick or receiving medical care. Seventy percent of participants had at least one (range 0–14) type of ethical concern or question. The most commonly experienced concerns pertained to being unsure how to plan ahead or complete an advance directive (29.4%), being unsure whether someone in the family was (...) able to make their own decisions (29.2%), deciding about limiting life-sustaining treatments (28.6%), wondering about disclosing personal medical information to others in the family (26.4%) and not being sure whether to undergo treatment because of cost (26.2%). Most were interested to some degree in getting help from ethics consultants in the future (76.6%). Given this prevalence, common concerns might usefully be addressed systematically, rather than exclusively on a case-by-case basis. (shrink)

We report our efforts to assess the skill of contemplating and evaluating argumentation. An adaptive forced-choice instrument was developed and administered to 6th grade students, 7th grade students who had participated in a year-long intervention that successfully strengthened their argumentation production skills, and expert arguers. The instrument was sensitive enough to detect differences in skill level across these groups. Despite their gains in production skill, however, 7th graders showed only modest superiority over the untrained 6th graders and performance well below (...) that of experts. Meta-level demands involved in evaluation but not present in production, we propose, may make evaluation more difficult. (shrink)

Discussions surrounding patient engagement and empowerment often use the terms “patient” and “consumer” interchangeably. But do the two terms hold the same meaning, or is a “patient” a passive actor in the health care arena and a “consumer” an informed, rational decision-maker? Has there been a shift in our usage of the two terms that aligns with the increasing commercialization of health care in the U.S. or has the patient/consumer dynamic always been a part of the buying and selling of (...) health care in the American system? Recent discussions of the issue exist in the popular press and in social media forums such as TEDMED, but few direct analyses of the ethical, legal, and policy ramifications of this possible shift in terminology are available in the academic literature. This paper analyzes our usage of the terms and any recent changes in the dynamic and discusses the ethical, legal, and policy implications of this simple terminology for the physicianpatient relationship. (shrink)

During this early stage of HIT adoption, it is critical that we engage in discussions regarding informed consent's proper role in a health care environment in which electronic information sharing holds primary importance. This article discusses current implementation of the doctrine within health information exchange networks; the relationship between informed consent and privacy; the variety of ways that the concept is referenced in discussions of information sharing; and challenges that surround incorporation of the doctrine into the evolving HIT environment. The (...) article concludes by reviewing the purpose behind the traditional obligation to obtain informed consent and the possibility of maintaining its relevance in the new environment. (shrink)

As policy makers place great hope in health information technology as a means to lower costs and achieve improvements in health care quality, safety, and efficiency, organizations at the forefront of building health information exchange networks attempt to weave the concept and function of informed consent into an evolving information-driven health care system. The vast amount of information that will become available to both health professionals and patients in the new HIT-driven environment can reasonably be expected to affect the relationship (...) between them in many ways, particularly in the area of informed consent. During this early stage of HIT adoption, it is critical that we engage in discussions regarding informed consent’s proper role in a heretofore unknown health care environment — one in which electronic information sharing holds primary importance. The central and largely unexamined question of whether and how the legal and ethical underpinnings of informed consent will fit into the context of HITenabled treatment is critical to both public policy and clinical practice. (shrink)

The widespread adoption of health information technology has been recognized as both a necessary element of health reform and a required building block of a modern, high performing health care system.

Information technology is considered a potentially transformative element in the field of health care by payers, providers, vendors, and consumers alike. Because of this transformative potential, health information technology adoption is viewed by many as a key component of health system reform. HIT is in its earliest stages, with diffusion of the technology still relatively limited; at the same time, there is growing awareness of its potential to affect the operation of the entire health care system as a result of (...) the vast amount of information that will become available to both health professionals and patients. (shrink)

As we move toward the creation of a networked health information environment, the potential of privacy intrusions increases, with potentially devastating impact on quality and access to healthcare. This paper describes the risks we face and proposes a framework to minimize those risks. In particular, it proposes nine principles to protect privacy in an information age.

An excellent critical analysis and scientific assessment of the nature and actual level of risk leading environmental health hazards pose to the public. Issues such as radiation from nuclear testing, radon in the home, and the connection between electromagnetic fields and cancer, environmental factors and asthma, pesticides and breast cancer and leukemia clusters around nuclear plants are discussed and how scientists assess these risks is illuminated.

: The medieval Karaite grammarian and exegete Abū l-Faraj Hārūn b. al-Faraj was a broad reader of the literature available in Arabic, in a variety of genres. Earlier studies have demonstrated that in his grammatical works on the Hebrew language, Hārūn adapted discussions from well-known compositions focused on Arabic and the Qurʾān. The following examination of Hārūn’s treatment of the subject of biblical majāz, non-literal language, aims to show that in constructing his sophisticated and innovative discussion of the topic, the (...) Karaite scholar read widely – and adapted creatively – incorporating the methods of a variety of genres in Arabic, including uṣūl al-naḥw, uṣūl al-fiqh and even iʿjāz al-Qurʾān and combining them together with earlier Jewish and Karaite scholarly tradition to produce what seems to be the first comprehensive discussion of non-literal language in Judeo-Arabic. (shrink)

Chapter One The Karaite Community of Jerusalem in the Tenth and Eleventh Centuries: Background and Development A time of intellectual change The eighth and ninth centuries were a time of great political and intellectual change for Jews ...

_The Hearing Impaired Child_ introduces the background issues of hearing impairment then discusses specific aspects. These include causes of hearing loss, speech and language, personality and emotional development, and careers. Appendices provide checklists for language acquisition and reading and writing skills, lists of useful addresses, a helpful glossary and references for further reading.